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Wednesday, October 16, 2013

We have had so much stuff go in every different direction it's been chaos! PJ had his fourth surgery last Thursday. It was delayed due to them squeezing in an MRI to see if they could visibly see the malformation. In the areas that were left there was deeper tissue still left behind that his surgeon wanted to try and see if, hopefully, it would stop the seizures without having to resort to the full hemi. We were very very leery of this as a fifth surgery just made our stomachs turn BUT we do truly trust his group of doctors and agreed it would be worth a shot. The surgery went very well and for once no blood transfusion was needed. He has more deficits now, which we expected and honestly they are not too bad at all in the grand scheme of things. PJ has some issues with his left arm and hand. He has a little tone throughout it and has caused some motor planning issues along with some left side neglect...all of which we should see some improvement on. He has some left side peripheral vision loss and possibly some visual neglect. He has already began compinsating for the visual changes and doesn't seem to mind too much. His left foot has more tone in it and we are looking at possibly getting a night time splint and a better fitted brace for extra support. Another change is PJ has started the thickened liquids diet...he was having a lot of problems tolerating regular drinks and fought us every time we offered it to him. Well come to find out he needed thinkened liquids, now he is a much happier boy. Oh the drool this boy can put out now with the weakness on his left side being more predominate...it is rediculous and he is hilarious with his sneaky ways of trying to wipe it (usually on my clothes when he conveniently buries his head with a hug). Good news, so far, no seizures....and trust me, I watch for them! More good news, PJ is officially a make a wish kid they accepted him about a month ago and we met his sponsors...who were so very sweet!! Overall I think he is a very blessed kiddo and we are even more blessed to get to say we are the parents of this strong willed little guy! Hopefully more good news posts to come. :-)